Bonkers Posted January 28, 2012 Share Posted January 28, 2012 Purp, I get the sense that you feel some members here are trying to force this oxygen thing down your throat. That's really not the case. We've all been accosted by religious zealots anxious to share their new-found 'truths' with those of us who just don't see. It's not like that either. What it is, is that everyone here honestly does understand where you're coming from and what your experience is. They also know that oxygen flat-out works - for virtually everyone. And they're dumbfounded when the one thing that they can trust, the one thing that they know they can go to when they feel a hit coming on, is rejected out-of-hand. If for no other reason than just to satisfy all these well-meaning folks who want nothing more from you but your pain, why don't you just give it a shot? If it doesn't work, what have you lost? If by some remote chance it does, look what you've gained. Ron Quote Link to comment Share on other sites More sharing options...
Purple Posted January 28, 2012 Author Share Posted January 28, 2012 Oh no, Ron I don't feel no one is trying to force anything down my throat, I'm very grateful people here care enough to insist on me, old stubborn, who was convinced until 2007 there was actually nothing to do about it. People here are so very caring, all I can say is thank you.... I mean thank you!!!! I called my clinic and to my great surprise, I got an appointment with my neuro for next Tuesday, noon... oh? I thought she wasn't available... good thing I called. If she says no, I'll see about it then. But I will ask her I want the test Batch asks to have done "a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D", the hormones count check, the oxygen... But one thing... should I tell her that I stopped the medication she prescribed to me and that I took those seeds and that I plan to try the fungus? Chances are if I tell her this she'll say I'm on my own then, no? Quote Link to comment Share on other sites More sharing options...
Bonkers Posted January 28, 2012 Share Posted January 28, 2012 It depends on how open she is to alternative treatments of CH, Purp. If she's a by-the-book, this is how I was taught and this is how it is sort of neuro, then yes, she'll probably toss you out on your ear. If she shows interest in your having the tests done that Batch is asking for and wants you to have oxygen after she reads the paper CHfather suggested, then no, she'll have shown that she's interested in alternative treatments, open to your trying them and will want to keep you onboard. However, some of our alt treatments (e.g. fungus) are illegal and she would be risking her license by advocating their use. You might want to hold off talking to her about those. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 28, 2012 Share Posted January 28, 2012 Here is my sense of what your priorities should be: #1. GET OXYGEN #10. Get testosterone test #11. Get vitamin D level test Yes, that's 1, 10, and 11. That's how big I think the gap is between getting oxygen and the rest. So if I were you I would not do anything (such as saying that you have stopped the other meds, or talking about alternative treatments) that would jeopardize your getting the oxygen. If I were you, I would be a model patient saying, "These meds are not fully working for me and I would like to have the safe, medically-recommended abortive, oxygen." I would have printouts of the articles with me. And I would try as best I could to dig in my heels and insist. All of that is what we did with my daughter's neuro. I'm not saying it will work; I'm saying that's how I would try. You know the neuro better than we do. And I'm not saying the testosterone test might not be valuable. I'm just talking about priorities. Here's an abstract of an article about testosterone (but notice these were people for whom oxygen did not work, and you haven't even tried oxygen yet): http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2006.00436.x/abstract As for the D3 test, I already covered this in my reply to your post at the D3 file thread. Yes, it would be nice to know, and -- as Ron says -- if your neuro is shockingly sympathetic, of course you can ask for that, too, but, really, it's completely safe right now -- in my non-doctor opinion -- for you to proceed with the D3. A very small number of people have had some bad, temporary reactions to D3 . . . but those have stopped when they stopped taking it, and it very probably was not because their D3 levels were already too high, which is all the test would tell you. Your general practice doctor probably would be quite willing to order this test, since low D levels are increasingly recognized as a health risk. It seems safe to assume that your neuro will not be able to help you with any medical issues related to busting, if there were any, so it's hard to see what you would gain, and easy for me to imagine what you would lose, by bringing up that subject. If your neuro does not prescribe O2, remember that it would probably be quite feasible for you to set up your own oxygen system using welding oxygen. These can easily be rented in the US, and many people use them. I don't know what Canadian practices are. You do have to promise not to blow up yourself or your neighbors through carelessness, I'm pretty sure. Quote Link to comment Share on other sites More sharing options...
Purple Posted January 31, 2012 Author Share Posted January 31, 2012 For the records, I'm just out of my neuro's office. I'm very happy I got what I actually wanted: a hormones count blood test prescription. Also the D3 vitamins test as suggested by Batch from CH.com, and while we're at it she said, why not check cholesterol, kidneys, liver... Sure. The more info, the better. As for O2, she confirmed what I tought: at that clinic, O2 is for chronics mostly, but I could have got it if I had insisted. I declined, since I feel either my cycle is ending, either I succeeded busting (I'm busting a 2nd time as I write btw). Besides a Kip 5 last night, slight shadows, I feel I'm coming out of this once again somehow and can start living again. Well we'll see. I managed to work my way not telling my neuro I had stopped verapamil and lithium. She didn't take my pulse, if so she would have known. She believes verapamil/lithium/Zomig nasal spray is the basic treatment and that if that works, why change? Quote Link to comment Share on other sites More sharing options...
bmcsjon Posted February 1, 2012 Share Posted February 1, 2012 Purple Ive tried getting 02 from my doctors but just cant seem to get a high flow system. Ive had my own bottles for over 20 years now. I realize things might be subsiding, but the beast always comes back. Might be in your best interest to just aquire your own equipment. jon Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 1, 2012 Share Posted February 1, 2012 Purp, so glad you're satisfied with the way your appointment went, and that your cycle seems to be ending! Yes, to start living again -- how great! Quote Link to comment Share on other sites More sharing options...
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